Chronic Disease Surveillance Systems Within the US Associated Pacific Island Jurisdictions

In recent years, illness and death due to chronic disease in the US Associated Pacific Islands (USAPI) jurisdictions have dramatically increased. Effective chronic disease surveillance can help monitor disease trends, evaluate public policy, prioritize resource allocation, and guide program planning, evaluation, and research. Although chronic disease surveillance is being conducted in the USAPI, no recently published capacity assessments for chronic disease surveillance are available. The objective of this study was to assess the quality of existing USAPI chronic disease data sources and identify jurisdictional capacity for chronic disease surveillance. The assessment included a chronic disease data source inventory, literature review, and review of surveillance documentation available from the web or through individual jurisdictions. We used the World Health Organization's Health Metric Network Framework to assess data source quality and to identify jurisdictional capacity. Results showed that USAPI data sources are generally aligned with widely accepted chronic disease surveillance indicators and use standardized data collection methodology to measure chronic disease behavioral risks, preventive practices, illness, and death. However, all jurisdictions need to strengthen chronic disease surveillance through continued assessment and expanded support for valid and reliable data collection, analysis and reporting, dissemination, and integration among population-based and institution-based data sources. For sustained improvement, we recommend investment and technical assistance in support of a chronic disease surveillance system that integrates population-based and institution-based data sources. An integrated strategy that bridges and links USAPI data sources can support evidence-based policy and population health interventions.


Introduction
Although chronic disease has long concerned high-income countries, 80% of chronic disease deaths occur in low-to middle-income countries (1). A complex interplay of socioeconomic, demographic, technologic, cultural, environmental, and biological factors explains this epidemiologic transition from communicable disease to noncommunicable disease (NCD) (1,2). The burden of chronic disease is substantial in the US Associated Pacific Islands (USAPI) jurisdictions (American Samoa, Guam (3,4), age-standardized cardiovascular disease (CVD) mortality estimates among the USAPI jurisdictions are generally higher than similar US age-standardized CVD mortality estimates (5,6) (Table 1). Centers for Disease Control and Prevention • www.cdc.gov/pcd/issues/2011/jul/10_0148.htm The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
The USAPI jurisdictions' population spreads across 104 inhabited islands in more than 3 million square miles of ocean, crossing the International Date Line. Despite the challenges of geographic isolation, dependence on US and international aid, and lack of health care funding (7), the USAPI jurisdictions are targeting chronic disease prevention by developing partnerships and approaches that reflect the interface between Pacific cultures and Western science (2,8,9). In addition, a May 2010 Pacific Island Health Officers Association resolution declaring a state of health emergency due to the epidemic of chronic disease encourages stronger coordination of partnerships across multiple sectors to mobilize policy, investments, and technical resources to reduce the prevalence and costs of chronic disease within the region (10). Effective chronic disease surveillance systems can support this effort and help the USAPI leadership monitor disease trends, evaluate public policy, prioritize resource allocations, and guide program planning, evaluation, and research.
Surveillance is defined as the ongoing, systematic collection, analysis, interpretation, and dissemination of data essential for health promotion and disease prevention (11). Chronic disease surveillance data sources supported by the Centers for Disease Control and Prevention (CDC), World Health Organization (WHO), and USAPI health care systems can be divided into 2 main categories: population-based (ie, household surveys) and institutionbased (ie, disease registries) ( Figure). The objective of this study was to assess the quality of existing USAPI chronic disease data sources and identify the capacity for chronic disease surveillance by individual jurisdiction, following WHO's Health Metric Network Framework (HMNF). We also offer recommendations for continued capacity building to strengthen surveillance within the region.

Methods
After reviewing the literature and documents available on the web or through individual jurisdictions, we established an inventory of data sources for monitoring standard chronic disease indicators (11). Using this list, USAPI chronic disease representatives identified their jurisdictions' existing data sources, frequency of data collection, and availability of analysis and reporting. For each identified data source, the frequency of data collection, analysis, and reporting was confirmed by the respective USAPI Ministry of Health . Publications included meet the following criteria: 1) they assessed chronic disease surveillance capacity for the USAPI region overall or by individual jurisdiction and 2) were published in English within the last 10 years (ie, 1999 through October 2010). We excluded publications that presented only results of USAPI chronic disease-related research (ie, epidemiologic, clinical, and qualitative) or program evaluation without inclusion of an assessment related to chronic disease surveillance in the region overall or by individual jurisdiction. Search terms were "chronic disease," "population surveillance," "disease surveillance," "American Samoa," "Guam/epidemiology," "Micronesia/ epidemiology," and "Marshall Islands." To select the publications, the titles and abstracts were reviewed by 1 author (G.H.) for relevance; those that met the inclusion criteria were selected. Subsequently, the entire text of selected publications was read and publications that did not meet the inclusion criteria were excluded.
We used the WHO HMNF as the foundation for assessing the quality of USAPI chronic disease surveillance data sources and identifying jurisdiction capacity ( that supports assessment and capacity building for health information systems in low-to middle-income countries (12). Two authors (G.H., H.I.) completed independent assessments for each data source by using supporting documentation retrieved from web-based archives, literature review, or from surveillance documentation provided by individual jurisdictions. Aggregate scores for each assessment criterion ranged from 3 (highly adequate) to zero (not adequate). We did not score data sources without complete documentation.

Results
USAPI data sources are listed by category and data availability by year (Table 3). A summary description of each data source follows.

Population-based data sources
The Behavioral Risk Factor Surveillance System (BRFSS) is a standardized survey that includes measures for chronic disease risk factors and conditions, preventive health practices, and access to health care among adults (≥18 y) (www.cdc.gov/brfss/index.htm). The BRFSS uses a computer-assisted telephone-interviewing system with participation limited to households with available telephone service.
The WHO STEPwise approach (STEPS) is a standardized population health survey of adults aged 25 to 64 years that measures chronic disease and associated risk factors. STEPS involves a 3-step sequential process: 1) a questionnaire assessing demographic, behavioral, and lifestyle risks; 2) direct anthropometrical and blood pressure measures; and 3) biochemical assessment of blood samples (www.who.int/chp/steps/en).
The Youth Risk Behavior Surveillance System (YRBSS) is a standardized national school-based surveillance system that surveys students in grades 9 through 12 to measure behaviors that contribute to unintentional injuries and violence; tobacco use; alcohol and drug use; unintended pregnancy and sexually transmitted diseases; unhealthy dietary behaviors; and physical inactivity. Participating USAPI jurisdictions conduct the survey every 2 to 4 years (www.cdc.gov/yrbss).
The Youth Tobacco Survey (YTS) is a standardized schoolbased survey that provides data necessary to support the design, implementation, and evaluation of tobacco prevention and control programs for students in middle (grades 6-8) and high (grades 9-12) schools. The similar Global Youth Tobacco Survey (GYTS) is a standardized school-based survey (students aged 13-15 years) designed to build global capacity to monitor youth tobacco use, guide implementation and evaluation of tobacco prevention and control programs, and compare tobacco use data (www. cdc.gov/tobacco/index.htm). USAPI jurisdictions generally participate in the YTS every 4 to 5 years. Each USAPI jurisdiction may conduct the YTS or the GYTS.

Disease registries
Cancer. Each jurisdiction collects data on cancer incidence, types, and sites and extent of cancer at diagnosis. USAPI jurisdictions submit their cancer data to the Pacific Regional Central Cancer Registry, which compiles and reports them to CDC as de-identified cancer information (www.cdc.gov/cancer/npcr).
Renal disease. USRDS is a national data system that collects, analyzes, and distributes information about endstage renal disease in the United States (www.usrds.org).
Medicare-certified dialysis centers operating in the USAPI contribute data to USRDS. Guam has 4 certified facilities submitting data; American Samoa has 1 certified facility and the CNMI has 2 certified facilities. The USRDS does not include FSM, Palau, or RMI (because of federal compact agreements).

Health system records
Vital statistics include data on births and deaths (including fetal deaths treatment, and discharge condition. Individual jurisdictions collect, analyze, and report hospital discharge data.

Literature review data sources
The MEDLINE and CINAHL database search found no published reports regarding assessment of chronic disease surveillance capacity within the USAPI region overall. Haddock (13) provided a historical perspective of Guam's communicable disease, vital statistics, cancer, and maternal-child health surveillance. Most published reports were specific to assessment of the USAPI's capacity for cancer control and prevention (including surveillance), summarized by Tsark and Braun (14) and published in Pacific Health Dialog (15).

Assessment of USAPI data sources
The following summarizes data source assessments (Table  4).

Content and scope
In general, the quality of data source content was rated as highly adequate; most jurisdictions reported participation in standardized population-based surveys (ie, BRFSS, YRBSS, GYTS, YTS, or STEPS). Jurisdictions also reported continual administration of vital records, disease registries (eg, cancer, USRDS), and other health system records (eg, hospital discharge). Collectively, these data sources provide most jurisdictions with uniform measures for cancer, CVD, diabetes, tobacco and alcohol use, physical activity and nutrition, other diseases and risk factors, demographics, and socioeconomic conditions.

Dissemination
Dissemination of metadata and microdata files varied across data sources. For example, dissemination of the BRFSS, YRBSS, GYTS, and YTS data analysis and reports was adequate, supported by the availability of reports within 12 months of survey completion and metadata accessible through CDC websites. Microdata are available on request or through web-based data repositories. In comparison, dissemination of STEPS data analysis and reports range from present but not adequate (FSM and RMI) (16,17) to adequate (American Samoa) (18). Although STEPS metadata and microdata are available through the STEPS website or on request, the timeliness of analysis and reporting varies across participating jurisdictions.
For USAPI jurisdictions participating in the USRDS, annual reports and a web-based data repository are publicly available. USAPI mortality estimates, supported by the NVSS and WHO, are timely (ie, <4 y), with metadata and microdata available (5,6). USAPI jurisdictions generate hospital discharge reports that are available to jurisdiction health program administrators and planners, physicians, and others on request.
Additionally, the WHO Western Pacific Office and Secretariat of the Pacific Community (SPC) provide webbased links to current country health profiles (19) and the Pacific Regional Information System databanks (20) for each USAPI jurisdiction. The WHO databanks, updated annually, contain mostly crude data supplied by jurisdictions or compiled from national surveys, reports, policy documents, and databases. The PRISM databank links to jurisdiction statistical websites and provides regional data tables. However, data availability, coverage, and reliability vary from jurisdiction to jurisdiction and for each reported The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
measure. For example, FSM and RMI are the sole jurisdictions that link (PRISM) to detailed reports related to mortality and hospital discharge summaries (20).

Integration
Overall, integration of available surveillance reports by USAPI chronic disease teams was rated as adequate across jurisdictions. For example, jurisdictions have used surveillance reports to develop a multiyear plan (2009-2013) supported by CDC for the integration of tobacco control and diabetes prevention and control programs, although the incorporation of available population-based data is generally more extensive than for institution-based chronic disease data sources. The USAPI are linking the multiyear plans for integrated tobacco control and diabetes prevention and control with other NCD prevention initiatives to establish holistic approaches, decrease program overlap, and leverage resources within the islands.  (9). Because most of the USAPI NCD multiyear plans were developed within the last 2 to 3 years, use of surveillance data in program evaluation was not assessed.

Discussion
Our review showed that the USAPI jurisdictions are using both population-based and institution-based data sources to build capacity for chronic disease surveillance. The USAPI chronic disease data sources are aligned with widely accepted indicators for chronic disease surveillance (11) that use standardized measures and methodology to collect, analyze, and report data related to chronic disease behavioral risk, preventive practices, illness, and death. Consistent use of these data sources allows the USAPI to establish population benchmarks, compare chronic disease trends regionally and among other population groups within the United States and internationally, set priorities for resource allocations, and guide evidence-based policy and population health interventions needed for chronic disease prevention.
However, the review also illustrated the need to strengthen USAPI chronic disease surveillance through expanded support for valid and reliable data collection, analysis, and reporting among population-based data sources. For example, 5 jurisdictions began monitoring and tracking health risk behaviors among youth and young adults (YRBSS, YTS) in the early 1990s. Although these surveys are administered at standard intervals, statistical analysis and reports are generated by CDC for participating jurisdictions that obtain an overall response rate of 60% or more and submit appropriate survey documentation. With the exception of Palau's YRBSS, timely and reliable data collection representative of the target YRBSS youth and young adult population across survey years varies among participating jurisdictions. Similar challenges exist with obtaining representative samples every 4 to 5 years for the YTS and GYTS.
Additionally, Guam, through participation in BRFSS, is the sole jurisdiction with sustained capacity for monitoring and tracking adult (≥18 y) health risk behavior and preventive practices. Other jurisdictions (eg, Palau) are building capacity for participation in BRFSS or STEPS (American Samoa, CNMI, FSM, and RMI), but financial resources and organizational capacity are limited. These constraints were particularly evident for STEPS, resulting in challenges with timeliness and consistency of survey administration (>5 y in American Samoa and RMI), data analysis (ie, standardized weighting and disaggregation by age, sex, and socioeconomic status), and reporting. USAPI jurisdictions' chronic disease surveillance infrastructure does not adequately support the standard and complex analysis of STEPS and other available surveillance data.
Although jurisdictional institution-based chronic disease data sources use nationally accepted standards and methodology, data quality concerns remain. These concerns are • Timeliness of data collection, analysis, and reporting.
• Underreported vital statistics registration data.
• Underreported diagnostic or mortality data for USAPI residents who receive medical treatment in the US mainland. • Systematic biases in diagnosis by health care providers in islands or atolls with limited medical support. • Health record system issues that include challenges Centers for Disease Control and Prevention • www.cdc.gov/pcd/issues/2011/jul/10_0148.htm with broadband Internet access, lack of electronic medical record systems, lack of synthesis or analysis across multiple record systems, incorrect or incomplete death certificates, misinterpretation of ICD rules, and variations of coding categories for unknown and ill-defined diseases or cause of death (5,6,14).
Finally, this review did not assess biases within population-based data sources. For instance, the YRBSS and YTS exclude youths not attending or registered within jurisdictional school systems. The BRFSS includes only households with an available landline telephone and uses self-reported data. Additionally, sample size in some survey modules may limit data analysis. Lastly, responders to population health surveys might not be representative of the total target population.

Conclusion
Chronic disease surveillance can provide a foundation for population health efforts designed to address health disparities within USAPI communities. Using the HMNF, this assessment provides an initial platform to understand the quality of existing USAPI data sources and identify jurisdictional capacity for chronic disease surveillance. The need to strengthen USAPI chronic disease surveillance through continued assessment and expanded support for valid and reliable data collection, analysis and reporting, dissemination, and integration among population-based and institution-based data sources is common across jurisdictions. Continued engagement of USAPI leadership across multiple sectors (eg, public health, business, education, faith-and community-based groups) to empower innovative systems and linkages for chronic disease surveillance is essential for understanding and improving health within Pacific communities.
Our recommendations are aligned with the White House Initiative on Asian Americans and Pacific Islanders (www.whitehouse.gov/administration/eop/aapi) and the Department of Health and Human Services (HHS) National Partnership for Action to End Health Disparities (www.minorityhealth.hhs.gov/npa/) designed to mobilize a comprehensive, community-driven, and sustained approach to reducing health disparities among racial and ethnic minorities. Recommendations include continued assessment, investment, and technical assistance in support of a chronic disease surveillance system that integrates USAPI population-based and institution-based data sources. Innovative strategies that link and expand these data sources could advance evidence-based policy and environmental transformations that target chronic disease prevention. Related recommendations include 1) collaboration among USAPI governance, local and regional partnerships, and US and international agencies to integrate surveillance; 2) investments to strengthen USAPI infrastructure that support an expanded surveillance system; 3) workforce development, through education and training, to promote quality surveillance; and 4) translation of data to inform policy, research, and program planning and evaluation at local, national, and international levels.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.  Population-based a

BRFSS
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.